Wednesday, August 27, 2008

A week after my birthday

Ten days have passed since my birthday, and so far so good! I’ve been doing great, getting so many messages of encouragement and support, and most important of love. So many people pray for me daily! I have made it this far because of that!

Last week I ventured out two times! Wow! That was exciting! I had an appointment with the nutritionist on Monday. The ride was smooth as the medi-taxi crew made sure I was ok, as usual. The doctor’s visit went without trouble. Mommy mentioned that she wants me to start the Aminoacid Diet and the nutritionist just gave her the go with a new formula named Elecare. I should start taking it by the first week of September. Mommy wants to make sure that I am well before switching my food… As I came back home, Mommy looked up all information of the new food and it seems to be fine. We will see…

On Tuesday, Therapist Pat came and did my routine range-of-motion checkup. We played with the farm animals and other toys… She is always so upbeat and happy! I wish everyone were like her!

The rest of the week had nothing of interest, until Thursday. At night I had a small incident that allowed me to travel a bit more, and at night! Just after Mommy and Daddy and NurseGlenna had finished eating my birthday cake, my G-tube came out! Mommy thought at first that it broke, but no… upon checking the G-tube she realized it was just deflated. Nevertheless, Daddy called up 911. The ambulance that arrived gave us a hard time because we live in a second floor… Mommy suggested taking me with wagon and all through the fire escape so things would be easier (a stretcher doesn’t fit through the stairs and I could not be moved). I laughed through it all. At the hospital, they managed to get a hold of a new G-tube and the intern actually was the one that knew how to stick it in… Hmm… Anyway, then we had a two hour stay until we got an ambulance to take us home. It was midnight… I enjoyed the lights and the night air. Everything looks so beautiful at night!

On Friday I was allowed to sleep a bit more. By midday the family psychologist visited us. And an hour later Therapist Evelyn appeared to do some OT on me. NurseKim took a few moments to educate her a bit more about SMA and what should be expected from me. Well, you know what they say about it… I just hold this deep secret in my heart: I will do MANY things… Just wait and watch! In the meanwhile, I’ll just humor everyone. Mommy gets psycho each time they try to sit me and I desat… I must admit it is uncomfortable as I cannot breathe while seating! It’s not fun, I tell you!

Saturday and Sunday were quite slow. I watched the complete Lord of the Rings saga! Oh, I adore Legolas! I love elves! Daddy tried to do a video-conference with my half-sister, Mandy. I hope that somehow she gets the love that he feels for her as well. I know Daddy misses her much. And her birthday was last Wednesday!

On Monday I got a date with my Pediatrician to get my 1 year shots! Oh, I should have known it… I was so happy to get out of the house! And then I got there, and they put me in a room, and I figure… Hmmm… Something is fishy, they are talking too much in hush sounds… Then there came the nurse with the needles! Terrifying! Well… At least it were not the LONG needles they used for my 4 month shots! So… I grew up another inch, and I weight a bit more… 30 pounds and 33 inches. I went home, quite tired from all the commotion. Daddy gave me medicine to prevent fever, and I was treated to watching that old cartoon about the blonde girl with big eyes who was an orphan… Yup, that Candy Candy cartoon… Whoa! I’m mesmerized! No songs, but it is really interesting. I think my first words will be “Srta.Pony, Hermana María, Annie, Anthony, and Candy”!

Therapist Pat passed by on Tuesday and repeated her exercise routine. She also told NurseKim about the goals and objectives of Early Intervention in my case. She repeated the picture-real thing association exercises, the farm animals that I love, and read me one of my favorite books. I am doing my best to show I understand more than they think. I am choosing what I like to see and for play, and love being demanding. Duh! I’m a diva after all!

I should get a visit from TherapistEllen and Therapist Evelyn tomorrow. The family psychologist should pass by on Friday… So we all keep on busy, especially me. Mommy finished one class with a high score. What a headache! Does that mean I am expected to do the same when I go to school? Sheesh! This overload of pictures and words all the time seems to imply that! Yeah, if it is not Baby Einstein on CD then it is Baby Einstein on DVD. I am so glad that finally I’m getting some fun with that Candy thing and of course with all my Disney stuff! I would be lost without my princesses!

Future plans: Well, in September I have a date with the GI to get a mickey button and a therapist reunion. In October I have a date with my physician, Dr.Bach and then with the pulmonary doctor. In November I have a date with the ophthalmologist and a checkup with my pediatrician. I always have many things going on, don’t I? I am pondering checking up the NY SMA center, I may benefit a lot from it. Now I have to convince Mommy to go ahead and plan that trip!

Well… Gotta have my baby-beauty-divalicious-sleep. Bye-bye!

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